OP0189-PARE NEW JIA-AT-NRAS RESOURCE MEDICINES IN JUVENILE IDIOPATHIC ARTHRITIS
Authors: D. Wilson
Journal: Annals of the Rheumatic Diseases (2022)

Background Biologics have been commissioned by the NHS for use to treat JIA since 2014. Many of the original biologics that were first developed have since lost exclusivity, allowing other manufacturers to produce highly similar versions (biosimilars). This difference between the originator and the biosimilar has caused confusion within the patient community, especially in how it has been communicated to them. Parents found the concept of biosimilars confusing and wanted more information about this, recommending that written material be provided. Previous conversations with healthcare professionals, parents and young people living with JIA had also found there was a lack of written information on all JIA medications so we looked into how this gap could be filled. Objectives Produce a new resource to clarify the confusion about the biosimilars and originators for the JIA patient community. Explain the different medications to treat JIA in a patient/parent friendly format so it can be easily referred to. Easy to see the different categorisation of the medications e.g. pain management, DMARDS, biologics and targeting synthetic DMARDS and include information regarding how they are taken, how often and usage. Methods Knowing there was a need for this information, a focus group was convened with young people with JIA, parents of children with JIA and healthcare professionals. From this focus group and separate conversations with healthcare professionals it very quickly became apparent a resource not only covering medications for JIA but detailing the wider JIA journey was needed. This resource would need to cover each step from diagnosis to a young person taking control of their disease management. It would also cover how the complexity of the immune system means that some children/young people respond differently to medication; help them to learn about the unpredictability of the disease and to take control of managing their disease, particularly as they move onto adult rheumatology services. NRAS worked collaboratively with health writer and healthcare professionals to make sure this new resource covered all the topics that were discussed at the focus group and detailed all the medications used to treat JIA, including information on the issue of differentiating between biologics and biosimilars. Results The Medicines in JIA booklet is now freely available to all parents, young people and healthcare professionals from the jia.org.uk website. The addition of visuals makes the information easier to navigate, clearer to understand and helps to illustrate the JIA journey. Along with the medicine directory which details all the medications to treat JIA. Conclusion The feedback NRAS has received from both healthcare professionals and parents has been very positive: “We think that they’re absolutely fantastic, they cover everything, and I’m so pleased I’ve got these to give to parents and children.” Paediatric Rheumatology Nurse Haywood Hospital “This is brilliant and much needed. Great piece of work much appreciated by all of us”. Lead Nurse Nottingham Children and Young People’s Rheumatology Service “This has been my absolute saviour! It gives you support on administering the medicines and made me feel right at ease after reading it” . Parent of child with JIA References [1]Medicines with JIA Resource, National Rheumatoid Arthritis Society Figure 1. JIA-at-NRAS: Medicines in JIA resource Disclosure of Interests None declared